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Table 5 PedsQL score of subjects with and without individual symptoms listed on SProND

From: Quality of life and symptom burden in children with neurodegenerative diseases: using PedsQL and SProND, a new symptom-based scale

  Physical health summary score Psychosocial health summary score Total PedsQL score
     Emotional functioning Social functioning School functioning Total    
  mean score mean score mean score mean score mean score mean score
  Yes No p-value Yes No p-value Yes No p-value Yes No p-value Yes No p-value Yes No p-value
1. Seizure (n = 13) 31.3 42.0 0.256 55.4 68.0 0.092 35.4 44.1 0.261 43.9 53.9 0.133 45.0 55.9 0.078 39.8 49.9 0.116
Neurobehavioural
2. Hyperactivity behaviour (n = 13) 45.4 34.0 0.225 58.5 66.3 0.302 37.3 43.0 0.464 46.7 52.1 0.353 47.6 54.3 0.233 46.5 46.2 0.961
3. Aggressive behaviour (n = 11) 50.6 32.6 0.064 59.1 65.4 0.428 37.3 42.6 0.514 47.2 51.3 0.573 47.5 53.4 0.378 48.5 45.3 0.634
Movements and mobility related
4. Involuntary movements (n = 26) 32.5 52.8 0.040 57.3 79.5 0.004 36.9 51.5 0.077 45.1 63.9 0.008 46.8* 65.3 0.005 40.9 60.2 0.004
5. Joint stiffness (n = 23) 24.3 62.5  < 0.001 57.8 73.5 0.035 34.1 53.1 0.012 42.6 62.1 0.002 44.9* 62.6 0.003 37.3 62.3  < 0.001
6. Muscle spasm (n = 19) 24.0 53.9  < 0.001 56.3 71.5 0.034 36.8 45.6 0.243 45.8 54.8 0.170 46.8 57.2 0.083 37.9 55.7 0.003
Breathing and swallowing
7. Swallowing difficulty (n = 9) 11.8** 46.9  < 0.001 55.0 66.3 0.178 31.7 44.1 0.148 40.0 53.1 0.084 43.0 54.4 0.113 30.8 51.4  < 0.001
8. Need for respiratory support (n = 6) 17.7 42.2 0.040 53.3 65.5 0.213 34.2 42.3 0.599 37.0 52.3 0.094 42.7 53.3 0.219 32.8 49.0 0.049
9. Drooling (n = 15) 15.0** 52.8  < 0.001 53.2 70.0 0.012 29.6 48.2 0.012 40.4 55.3 0.025 40.7* 57.7 0.005 31.3 55.8  < 0.001
Daily activities
10. Pain (n = 9) 22.6 43.3 0.044 55.6 66.1 0.209 33.3 43.5 0.238 38.8 53.5 0.051 43.3 54.3 0.126 35.3 50.0 0.038
11. Constipation (大便次數) (n = 18) 25.9 50.3 0.005 56.9 70.0 0.070 37.5 44.4 0.355 49.1 51.0 0.778 48.3 55.1 0.272 39.4 53.1 0.024
12. Sleep problem eg. insomnia, day/ night disturbance, night terror etc.(n = 15) 25.0 47.5 0.011 49.7 73.3 0.001 31.0 48.1 0.020 39.3 57.6 0.004 40.2* 59.7 0.001 34.6 54.7 0.001
13. Anorexia/ nausea/ vomiting (n = 11) 24.4 44.1 0.041 53.2 68.0 0.057 32.7 44.6 0.141 40.0 54.2 0.043 42.6* 55.5 0.050 35.2 51.2 0.015
14. Urinary problem (n = 20) 26.3 51.3 0.004 56.6 71.2 0.041 35.8 46.8 0.140 50.1 50.0 0.988 47.4 56.0 0.153 39.3 54.1 0.015
  1. *Mean psychosocial health summary score of subjects with these symptoms is approximately 70% of subjects without these symptoms
  2. **Mean physical health summary score of subjects with these symptoms is less than 30% of subjects without these symptoms